Philadelphia

I went to Dr. Steven Katz (Infectious Disease) in Philadelphia yesterday - specifically Fairless Hills - and thought he was very good.

He spent nearly two hours with me and my husband, going over my medical history, ordering additional studies and tests, and developing a new (and I think better) treatment regime. Without insurance, he is $190 - that is for your entire 2-hour time.

I definitely recommend him - even just to develop a treatment plan that you can bring back to your primary care physician to replicate.

When I told him that I had been tested for XMRV and were waiting for the results, he got really excited and asked, "Where did you get that done?" I explained about VIPDX and WPI being associated with them, and he actually wrote it down on his desk calendar in BIG LETTERS - so I imagine he is going to look it up and give it to patients if warranted. He also asked me what the cost is... so, he's clearly planning on using it...or concerned about his patients being able to use it.

He was very good. I've joked - he's like an unfunny version of House. He doesn't have a great "bedside manner" but you can be sure he is going to truly "treat you" and get to the bottom of all your various probems. He also wanted to see me again in 3 weeks to see how meds were going and to re-adjust prescriptions based on how they were working...versus just writing a prescription and sending me on my way. I haven't met a doctor like this in YEARS!

I truly think he is an un-utilized asset in the ME/CFS word - and I would reccomend anyone in the NY/NJ/Philadelphia area to get an appointment.

I saw an ID/Internal Mediicine Dr yesterday for the 1st time South of Boston. He was an interesting Character. He was excited by the positive studies. He was also very excited about the Disability/2 Day exercise (Staci Stevens protocol) and what that would mean if I test positive for XMRV. I am part of an NIH study, if I test positve for XMRV, if not, I guess I will not be part of the NIH/Cornell guided study with Dr. Bell.

It's been over 2 months since my blood was drawn and still no word! Trying to forget about it, just seems so long to get a result. Not much that we can do with the info at this point in time anyways, but I just want to KNOW!

He is excited to drug me up when they figure out what will "wack" this thing, I think these were his words, sorry long drive for me.

also, this Dr. mentioned that the British would not be able to find shoes on their feet! Found that to be an interesting remark! Although, I saw a Dr at MGH recently which did not find XMRV, but perhaps there is a good reason for this?! Not sure what that would be?

I saw an ID/Internal Mediicine Dr yesterday for the 1st time South of Boston. He was an interesting Character. He was excited by the positive studies. He was also very excited about the Disability/2 Day exercise (Staci Stevens protocol) and what that would mean if I test positive for XMRV. I am part of an NIH study, if I test positve for XMRV, if not, I guess I will not be part of the NIH/Cornell guided study with Dr. Bell.

It's been over 2 months since my blood was drawn and still no word! Trying to forget about it, just seems so long to get a result. Not much that we can do with the info at this point in time anyways, but I just want to KNOW!

He is excited to drug me up when they figure out what will "wack" this thing, I think these were his words, sorry long drive for me.

also, this Dr. mentioned that the British would not be able to find shoes on their feet! Found that to be an interesting remark! Although, I saw a Dr at MGH recently which did not find XMRV, but perhaps there is a good reason for this?! Not sure what that would be?

GG

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Wow...your doctor sounds fantastic! And, funny! Maybe in order to be a half decent doctor treating ME/CFS -- you need to be a little whacked in the head! I mean, everything about this disease is WIERD! So, our doctors should be TOO!

I am also waiting for my XMRV tests - now officially four weeks. They told me 6-8 weeks....ARGH! Want to know NOW! You should (hopefully) have yours any day now.

I saw an ID/Internal Mediicine Dr yesterday for the 1st time South of Boston. He was an interesting Character. He was excited by the positive studies. He was also very excited about the Disability/2 Day exercise (Staci Stevens protocol) and what that would mean if I test positive for XMRV. I am part of an NIH study, if I test positve for XMRV, if not, I guess I will not be part of the NIH/Cornell guided study with Dr. Bell.

It's been over 2 months since my blood was drawn and still no word! Trying to forget about it, just seems so long to get a result. Not much that we can do with the info at this point in time anyways, but I just want to KNOW!

He is excited to drug me up when they figure out what will "wack" this thing, I think these were his words, sorry long drive for me.

also, this Dr. mentioned that the British would not be able to find shoes on their feet! Found that to be an interesting remark! Although, I saw a Dr at MGH recently which did not find XMRV, but perhaps there is a good reason for this?! Not sure what that would be?

GG

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These are actually the most hopeful signs of progress I've read yet! IDs sitting up and taking notice! Fantastic! You guys keep going to these new docs and making them aware of XMRV for me, would you? I can't get out of bed! I'm hanging on your every word!
:victory::Sign Good Job:

I can't wait until PR is filled with reports from patients of IDs sitting up and taking notice and taking them seriously. I am a veteran of the bad old days of being told my arrogant doctors, "There is nothing wrong with you - you must have psychiatric problems because all our tests are negative." :Retro mad:

As far as Mass Gen not finding XMRV, who knows? There are so many possible reasons that could happen. Guess we just won't know for a while yet.

As far as waiting for your results goes, I feel for you. I waited for 10 months for testing results through a WPI study (lucky me to have been enrolled), but glad the wait is over!

These are actually the most hopeful signs of progress I've read yet! IDs sitting up and taking notice! Fantastic! You guys keep going to these new docs and making them aware of XMRV for me, would you? I can't get out of bed! I'm hanging on your every word!
:victory::Sign Good Job:

I can't wait until PR is filled with reports from patients of IDs sitting up and taking notice and taking them seriously. I am a veteran of the bad old days of being told my arrogant doctors, "There is nothing wrong with you - you must have psychiatric problems because all our tests are negative." :Retro mad:

As far as Mass Gen not finding XMRV, who knows? There are so many possible reasons that could happen. Guess we just won't know for a while yet.

As far as waiting for your results goes, I feel for you. I waited for 10 months for testing results through a WPI study (lucky me to have been enrolled), but glad the wait is over!

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Hang in there Susan, hopefully there will be more and more positive changes coming soon! Sorry to hear of your situation. I know I am "lucky" and there are bedbound people out there, you guys are my inspiration! I luckily can still work, unfortunately my disability testing is not likely to be enough for me to go out on disability. It's a double edged sword, I can keep my good health insurance, but I can't live much of a life so that I can continue to work! Ugh.

My brother was a paraplegic from an accident and he was my inspiration for my many years in College and then University. He suffered with a lot of pain and last fall, I had a Major Flare up and could relate to his lifestyle even more than before. (He died 4 years ago at the age of 39, I turned 40 this year, I know he is in a better place now, and hopefully he is reading this.) "Luckily" that has quited down a lot, (went gangbusters to get some answers, went to many Drs) pain is still present, but more bearable.

GG

PS Susan you can access the Library when you hit 130 postings. FYI It will be on the Main Forums page.

Hang in there Susan, hopefully there will be more and more positive changes coming soon! Sorry to hear of your situation. I know I am "lucky" and there are bedbound people out there, you guys are my inspiration! I luckily can still work, unfortunately my disability testing is not likely to be enough for me to go out on disability. It's a double edged sword, I can keep my good health insurance, but I can't live much of a life so that I can continue to work! Ugh.

My brother was a paraplegic from an accident and he was my inspiration for my many years in College and then University. He suffered with a lot of pain and last fall, I had a Major Flare up and could relate to his lifestyle even more than before. (He died 4 years ago at the age of 39, I turned 40 this year, I know he is in a better place now, and hopefully he is reading this.) "Luckily" that has quited down a lot, (went gangbusters to get some answers, went to many Drs) pain is still present, but more bearable.

GG

PS Susan you can access the Library when you hit 130 postings. FYI It will be on the Main Forums page.

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GG-

I'm very sorry about your brother. This must have been a painful loss for you.

130 posts, huh? Did not know that. I just became aware that there was a library accidentally yesterday. Thanks for the info.

I'm glad your pain has quieted a bit. It is not pain that keeps me in bed. It is an overwhelming lack of energy/sick feeling. Is that unusual? Sometimes I hear so much of people being bedridden with more obvious neuro or pain manifestations that I feel like a freak even here at times. Any tiny little effort exacerbates it. When I'm really bad, doing anything, even in bed, becomes undoable. I am glad now that I am able to turn on my laptop, read PR and even post, but even that is tenuous and can change daily. Thank goodness you are all here to help me through!

I'm very sorry about your brother. This must have been a painful loss for you.

130 posts, huh? Did not know that. I just became aware that there was a library accidentally yesterday. Thanks for the info.

I'm glad your pain has quieted a bit. It is not pain that keeps me in bed. It is an overwhelming lack of energy/sick feeling. Is that unusual? Sometimes I hear so much of people being bedridden with more obvious neuro or pain manifestations that I feel like a freak even here at times. Any tiny little effort exacerbates it. When I'm really bad, doing anything, even in bed, becomes undoable. I am glad now that I am able to turn on my laptop, read PR and even post, but even that is tenuous and can change daily. Thank goodness you are all here to help me through!

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I can totally relate. I don't have tons of pain - sometimes joint pain - but really only when it's going to rain. For me, it is unbearable fatigue - even holding a pencil hurts. It's like everything gets heavy and I can't move. And, it changes daily (hourly) for me, too.

I can totally relate. I don't have tons of pain - sometimes joint pain - but really only when it's going to rain. For me, it is unbearable fatigue - even holding a pencil hurts. It's like everything gets heavy and I can't move. And, it changes daily (hourly) for me, too.

GG - I am sorry about your brother. (((((HUGS))))

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Thanks for th HUGS! Yeah, I cried a lot, better than keeping it all in, that is part of life, we are all going to die some day. I have wished for that day to be sooner for myself on some of my most painstaking days! Just a horrible existence living with chronic pain, I have a lot of empathy for people who suffer like that for years and years, and it gave me some insight as to why they do crazy things. I think it definetly affects your thinking, how can it not?

I'm very sorry about your brother. This must have been a painful loss for you.

130 posts, huh? Did not know that. I just became aware that there was a library accidentally yesterday. Thanks for the info.

I'm glad your pain has quieted a bit. It is not pain that keeps me in bed. It is an overwhelming lack of energy/sick feeling. Is that unusual? Sometimes I hear so much of people being bedridden with more obvious neuro or pain manifestations that I feel like a freak even here at times. Any tiny little effort exacerbates it. When I'm really bad, doing anything, even in bed, becomes undoable. I am glad now that I am able to turn on my laptop, read PR and even post, but even that is tenuous and can change daily. Thank goodness you are all here to help me through!

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Thanks for the kind wishes, yes 130 postings and acess to the Library! Unless it has changed for some reason? Let me know if that is the case.